Jane's journey with Endometriosis (5 min read)

Posted on 21st March, 2023

As part of Endometriosis Awareness Month we sat down with Jane, one of our Product Managers here at Salve, to discuss the journey towards diagnosis, how Endometriosis has affected Jane's day-to-day, and what advice she would give to others experiencing symptoms of the condition.

What was your journey to diagnosis?

My periods had always been painful. I had spoken to different GPs about it a few times throughout my twenties, which didn’t amount to much, but after I turned 30 the pain seemed to intensify. I was also incredibly fatigued from around a week before my period would start until it was over, would suffer from nausea and gastrointestinal issues, and developed moderate hormonal cystic acne. 

After about 3 years of worsening symptoms, I made an appointment with my GP explaining how I felt the level of pain was beyond what I considered to be normal. He immediately suggested that it could be endometriosis and referred me for a transvaginal ultrasound scan at a hospital. 

At the scan appointment, the ultrasonographer mentioned that they found multiple adhesions and that one of my ovaries was adhered to my uterus – but couldn’t tell me outright that it was endometriosis as that would need to be confirmed by a doctor. They sent the results back to my GP who did confirm that it was.

About a year later, my GP sent me for another scan with a gynaecologist at a different hospital where they found the adhesions had increased, and I’d also developed two endometriomas (chocolate cysts). Using the ASRM classification scale, this would be considered Stage III or IV endometriosis depending on the size of the endometriomas.

What treatment have you received so far?

Prior to my diagnosis, I was prescribed naproxen (an NSAID similar to ibuprofen) and omeprazole (an acid reflux medication to protect my stomach), which I was instructed to take along with co-codamol during times of intense pain. I also tried a TENS device, but honestly it just tickled and zapped without minimising anything.

As a result of my second scan, I decided with the gynaecologist that I would get a hormonal IUD (Mirena) inserted to help alleviate my symptoms. The Mirena IUD is a birth control method containing progestin, a synthetic form of progesterone, which often helps relieve period symptoms and is commonly used as a treatment option for endometriosis. 

I opted to have this done at the hospital so I could receive a local anaesthetic. Although IUD insertions are relatively painless for a lot of people, I had also heard many traumatic stories and didn’t want to take the risk. The NHS don’t tend to mention anaesthesia as an option, but I asked for it and my doctor was understanding of my concerns and scheduled it. When the time came, I didn’t even feel the IUD go in. The most uncomfortable part was the positioning of the speculum.

It took 18 months for my body to get used to the IUD, with the first month being incredibly painful with almost constant bleeding and then the rest of that time having two-week-long periods every fortnight. The pain has lessened now, though, and my period is back to normal but extremely light. I don’t even need to use sanitary products anymore. Another plus: my acne cleared up considerably (although still very much a bane of my existence!).

I still get painful cramps, but most months it is more manageable – especially compared to how it used to be. I still have the odd month where I need to take a day or two off work, but it’s no longer a monthly necessity. I still maintain my repeat prescription for naproxen and omeprazole, but I only need to refill it every 5 months or so.

Aside from my endometriosis symptoms, though, there have been some unpleasant changes since getting my Mirena. I’ve developed body dysmorphia/dysphoria which objectively I recognise as being an unreasonable way for me to think. My internal dialogue fluctuates between, “Yes, this looks like me and I look nice,” and, “Wow, how do people not throw up when they see you?” It’s extreme and not at all how I felt about myself two years ago. Of course, I can’t categorically say that the IUD is the cause, but I have always been sensitive to hormonal birth control whenever I’ve tried it in the past – particularly its effects on my emotional/mental state – so I am weighing up whether or not I want to continue with this treatment option.

I’m now soon turning 37 and it’s been a long road, but still I feel stifled by this condition and its treatment pathways in the NHS. The NHS’s approach is to treat based on symptoms rather than its physical presence in someone’s body and there are no regular checkups or annual scans. The onus is on the patient to request additional referrals via their GP when they feel like something is “wrong” or worsening. My hope is for it to one day be treated like any other invasive disease.

How would you advise someone approach their GP to explore a diagnosis?

I would start by using a diary or app (I personally use Clue) to track your menstrual cycle – your bleeding patterns, pain, fatigue, bloating, digestive issues, nausea, etc. – so that you are armed with data for your appointment. Endometriosis UK have a pain and symptoms diary printout you can use, too.

Be direct and firm in requesting a referral for an ultrasound to investigate if it is not offered by your doctor as part of their plan to deal with your symptoms.

I was fortunate in that my GP was proactive and sensitive to female reproductive illnesses, but this unfortunately is not always the case. Don’t be afraid to ask for what you need.

How has endometriosis affected your working life?

Even before I knew I had endometriosis, some days it was impossible for me to work. I would go into the office, but sometimes end up in the bathroom just so I could sit on the floor in a ball and quietly cry. I often couldn’t stand up straight or walk properly. I even got myself a ‘please offer me a seat’ badge from Transport for London because standing on the Tube for 40 minutes each way was exhausting – but I never actually mustered the courage to wear it.

I struggled with shame, so I would avoid bringing it up in workplace settings. I didn’t want to deal with any misplaced scrutiny and judgement. In my early-mid twenties I even judged other women for taking time off work for period pain, which I now acknowledge as a result of my own internalised misogyny and it’s one of my biggest regrets. I was forcing myself to white-knuckle through my own pain because I wanted to be one of the “good” ones and be seen as low-maintenance, and it felt unfair that others weren’t doing the same. As I got older, though, I was able to shed the shame, develop more empathy for myself and those around me, and started to care less about external friction when the topic came up. If someone can’t sympathise with chronic pain and illness just because it also happens to be linked to menstruation, that is an area of self-improvement they need to tackle in their own time and not my responsibility.

Working at Salve, I do feel lucky. Everyone’s much more aware of reproductive issues and illnesses. Although I do still experience guilt when I need to take a day or two off in a particularly bad month, I never feel as though it is going to affect my colleagues’ opinions of me. I am much more open about it here than I have been in previous jobs because I now realise it’s just the same as needing time off for any other kind of health problem – and no one makes me feel otherwise. But the fact that I feel lucky is really indicative of the work still required to remove the stigma.

What adjustments do you wish employers would put in place?

The following is not an endometriosis-specific statement. I want this to apply to all menstruation issues and related conditions because, in the end, we are all in extremely similar boats – just with different root causes.

Make it judgement-free. See it the same as you would any other reason for feeling unwell. Have empathy. Understand that it is not possible for someone to be their normal, productive self if they’re dealing with pain, vomiting, migraines, extreme fatigue; all that fun stuff. Be mindful that it’s not just physical symptoms. When first receiving a diagnosis or news of a condition worsening, people may be upset and need time to process this information emotionally. Create an environment where people don’t feel ashamed or a burden for needing to take care of themselves. 

Do you think the perception of endometriosis is changing?

Yes, for sure. There is a lot more awareness now. A while ago my mum asked me, “Why do so many people have endometriosis now? No one even knew about it when I was younger, so how can so many people have it all of sudden?” and the answer to that is pretty simple: awareness and education. In the past, how many people avoided going to their GP due to fear of being dismissed by their doctor? How many people would have gone to their GP only to be told to go away and have some paracetamol with a hot water bottle? Variations of the latter happened to me several times throughout my twenties, and if I had been taken more seriously then perhaps I would have received a diagnosis sooner.

There has been a study on gender bias in healthcare showing that women's pain is frequently underestimated both in its rating and treatment – and that is not to mention the racial bias Black women face in addition to the gender bias – so there is still a lot to be done concerning women’s pain and health in general, but I definitely feel a shift in perception regarding endometriosis specifically.